Friday, December 30, 2011

Best of 2011

It's been a big year.  Maya started walking (see posts 3, 8a, and 8b), magically learned letters, was obsessed with vultures, then dragons, now alligators.  She started preschool and turned from a toddler into a little girl (who still toddles).  The blog won an award.  We were able to fundraise all of the money needed for Maya's exome sequencing in 6 hours, and you generous folks kept donating, raising an additional $1,050 that will help another undiagnosed child (or children).

2011 was a good year :)

Here are the top posts that were written in 2011, ranked by number of reader comments. (I was going to do 10, but there were a lot of ties, so it grew to 15) 

1. We Are More Thankful Than You Are 
(Why gratitude is sometimes sweeter for parents of kids with special needs)

2a.  For the therapists, from the mom
(An open letter to the therapists who come to our homes to work with our kids)

2b.  The Balance 
(In which I try to figure out how to balance therapy with real life)

3.  Simple certainty & Kristi Yamaguchi.  Wait, what?  Kristi Yamaguchi? 
(I realize that how people see Maya is totally not what I see, and that maybe I finally understand Kristi Yamaguchi's parents.)

4a .  He's just not that into us (doctor style) 
(Reflections on another genetics appointment, during which the doctor tries to break up with us and I won't let him--the plight of the undiagnosed family.)

4b. My kid is nonverbal, we use an iPad, and I still didn't like that piece on 60 Minutes 
(A response to 60 Minute's "Apps for Autism" piece)

5a. Life, Undiagnosed (and how I've come to be ok with that)
(My evolving stance on being undiagnosed, from the moment of the first "she needs genetic testing" phone call to the present)

5b. After the Airpost: Reflections, and the Boats of Acceptance
(A one-year-later follow up piece to Amsterdam International)

5c. We've got some medical news (part 1)
(In which I recount Maya's genetic journey and lay the foundation to tell you guys about exome sequencing)

6. Pull up a chair
(The tale of our assistive tech re-evaluation, written in an you're-right-there-in-the-room-with-us style.)

7a. We said we'd walk together, baby, come what may . . . 
(On our 5th anniversary, I look at our wedding pictures for the first time, and put together a post made up of them, so you can "come to our wedding" too.)

7b.  Behind the scenes: The making of the 2011 holiday card
(The blooper reel from our photo shoot.  My sister said it's the "funniest post you've done in a long time.")

8a. Hold on to these moments as they pass
(I realize that some day I won't remember when Maya used a walker, and a video of her taking a few wobbly steps.)

8b. See Maya walk.  Walk, Maya, walk! 
(The first day that she really, really walks.  Right across the apartment.  On video.  Amazing!)

8c. First day of preschool! 
(A video montage of Maya's first day of preschool)

It was fun to go back and look at these, and to really see (in the pictures and videos) how far a year has brought us.  Here's to 2012 :)

Thursday, December 29, 2011

Did you just celebrate a holiday?

Maybe you celebrated Christmas, maybe Hannukah.  Maybe relatives or friends came to visit.  Maybe your living room/playroom/ kids' bedrooms looked like there's been some sort of toy store explosion.

Maybe your kids got books that make noises:

Or maybe you've got some singing Christmas cards around (probably by now, you wish they would just stop singing):

Or maybe you used some fancy electronic lights in your menorah:

Or--forget--the kids, maybe this year the grownups got some fun new "toys" to play with:

Maybe now, while holiday detritus is still lingering here, there, and everywhere, is the perfect time to revisit button battery safety.  Because every item pictured above contains a button battery, and like I've said before, these tiny items pack a very dangerous (sometimes deadly) punch.

After my last post on button batteries, I received an email about Energizer's new awareness campaign, The Battery Controlled.  The company is redesigning the packaging for their button batteries to make them more childproof and include improved safety warnings.  Still, the most important thing is for parents to become aware of how dangerous these batteries can be (which is why I keep mentioning them, and encourage you to share this information with any other parents you know). 

One of the links that I was sent was to this very-short-and-amazingly-powerful video.  Check it out.  Share it.   (It's only 2:16 long and beautifully done)

That same email also referred me over to Emmett's Fight.  Emmett was 12 months when he found and swallowed a button battery (it had fallen out of a remote to his family's DVD player, unbeknownest to them).  His family is committed to raising awareness about the dangers of button batteries through their website, and continue to tell his story on their blog.  It's a great resource for those interested in raising awareness, and Emmett's fighting spirit has brought him a long way (per the family's blog, he has had 4 inches of his  esophagus removed, has had multiple cases of collapsed lung, has endured 19 surgeries, has been under general anesthetic 20 times so far and he has had close to 200 X-rays. He has been hospitalized in the Pediatric ICU on and off for a total of 7 months).

Take a look around your home.  Make sure that items with button batteries are only played with under careful supervision.  Share the video, share the information, help spread the word so that all parents of small children realize that button batteries are dangerous.

Wednesday, December 28, 2011

Today, it's all about me

That's right--me.  Dana.  (aka "the mom"  aka "Maya's mom") 

Ellen of Love That Max asked me a little while back if I'd be interested in writing something for a guest series she's running this week, entitled "This Is How I Do It" . . . and despite not really knowing how I do it, or what "it" even is, I jumped at the chance.  (I've never done a guest post before, and I felt almost like a real writer.  Almost.) 

She sent a list of questions---not about Maya, just about me---and it was fun to come up with the answers and share a little bit more about myself, the things that keep me going, and why I rock (her words, not mine). 

My post is running today---head on over here and check it out!***  While you're there, check out the others in the series, which started on Monday and will end Friday. 

***My favorite question was the last one, so if your attention span is feeling short tonight, skip to the end and read "I rock because . . ." first.

And since we're talking about me, here are two pictures from Christmas morning (the others will arrive someday, after I upload and edit all 7 million of them):

My two favorite things on Christmas morning . . . Maya and my new scanner.

This thing is going to change my life into a mostly paperless existence.  You know, once I get it out of the box, install it, and start using it. 

PS.  If you're new here today, popping in care of Love That Max, welcome :)  You may want to swing up to the "If you're new here" tab to get the lay of the land. 


Saturday, December 24, 2011

Dear Santa

Dear Santa,

It's me, Maya.  I think we need to clear the air.

This year, when Mom & Dad brought me to visit you, I was excited.  They told me that you were coming, and I was happy.  I've been practicing saying your name all month!  ("Sssss!")

This is us---do you remember?

And then I heard your jingly bells and I looked up and suddenly, you were there!  I couldn't believe it!

Santa!  It's really you!

But then . . .well, Santa, I don't really know what happened.  I mean, I had been waiting for to see you for a long time.  But when my big moment came, I got a little scared.

And then  . . . then I got a lot scared.

And you were so nice to me, and talked to me about my Christmas wishes, and whispered nice things . . .

 . . . but I still liked you a little better from a distance.

But there's something you should know.  I'm still a big fan.  As a matter of fact, I couldn't believe that you had given me a present for visiting you!  I was amazed.

 It made me want to shout, "Santa's #1!"

So, I hope there are no hard feelings, Santa.  Parker and I are really, really excited for you to come visit.  All day long, Mom and Dad were asking me, "Maya, do you remember who's coming tonight?" and I would say, "Sss!" (As if I could forget you were coming.  Ha!)

I got things all ready for you.  First, I put some cookies on a special plate that I made with my friends at preschool.

Then, Daddy said that maybe this year we should leave sugar for the reindeer (we used to leave hay, but we thought they maybe could use a little extra energy).  I thought that sugar was a great idea!

Like, a really, really great idea!!!

I helped to scatter it around the plate so that all of the reindeer can get a lick.

Santa, I hope that you have safe travels tonight, flying all around the world.  I want you to know that even though I was scared of you (a little), I still want you to visit my house.  Also, even though sometimes I'm a little naughty, I'm still mostly a good girl.  And when Mommy asks me, "Maya, are you a good girl or a bad girl?" and I say "Ba!" with a naughty smile, I'm just joking.  I'm not really a bad girl! 

Also, don't forget Parker!  He's, like, the best doggie ever.

Lots of love always,
The cutest little girl ever
(that's me, Maya!)

A note from Dana:  If you want to see Maya on Christmas Eves past, go check out this post :)
And if you want to see the past 3 years of Maya's visits to Santa, go check out this post :)

Cookie decorating---fun for everyone, and you can sneak in some OT, too

I have some things to talk about--namely the plight of our assistive technology quest--but that will have to wait until after Christmas.  Right now we're all-holiday-fun-all-the-time, trying to fit in fun crafts or activities.  Here are some pictures from cookie decorating, done last weekend.

Cookie Decorating
I made sugar cookies and bought a big gingerbread man (at Trader Joe's for $2) for us to decorate.  Whipped up a simple buttercream frosting (3c powdered sugar, 2 sticks of butter, 1tbl vanilla, a few tbl of milk) and added some different food colorings for fun.  Maya had a great time playing with all of it, though the adults did a lot of the decorating.

Managing to sneak a little fine motor work into our decorating

Maya decides that she wants to use the blue icing.  About 10 seconds after this picture she came to the conclusion that the knife was too difficult to use, and dove in with her hand.

Grandma, there's icing on my hand!

And then she rolled the frosted hand in sprinkles.  It looks delicious.

Tuesday, December 20, 2011

Behind the scenes: The making of the 2011 Holiday Card

Background info:  The photo shoot was done in our living room, on the floor (sans dropcloth---it seem like a good idea, but we would have been tripping on it, and I don't think it would have contained the mess, anyway).  The backdrop was holiday stuff that we tape to the back of our couch (with black duct tape).  We took 233 pictures.  The clean up is an ongoing effort---when I dust, I'm still finding flour.  It keeps going airborne and redistributing. 

All pictures will be enlarged if you double click (I think).

In the beginning things were festive, but flourless . . .

(sprinkling flour)

 Then, the stage was set . . .

And the talent was brought in . . .

Maya: What is this stuff?
Parker: Guys, this seems like a very bad idea.

Maya: This is fantastic!
Parker:  (gulp)

Maya: I think I could be very naughty with this stuff.  Hee hee!
Parker: I think I'm hyperventilating.

Parker: Save meeeeeeeeeeeeeeeee!

This flour is so slippery!

She had some fun shaking the bag . . .

and then moved on to dumping.

This is the most fun I've ever had!
(that's Maya talking, not Parker.  In case you can't tell)

Maya: Daddy!  I need more flour!
Parker: Please no. 

Maya: Whoa!
Parker: Seriously, are you guys seeing this?

Maya:  Hey Mommy, are you watchin' me?
Parker: Yeah, is anyone watching?  Anyone? 

Maya:  Woot woot!  Can a girl get some more flour up in here?!
(note Parker seeming to stretch as far as he can away from her)


Parker: I can't believe they really gave you more.  Everyone has lost their mind.

When Dave wasn't quick enough to refill the bag, Maya took matters into her own hands:

Maya: Fine, I'll do it myself.
Parker: Someone needs to cut her off.

Maya: FUNNEST DAY EVER!!!!!!!!!!!!!!
Parker: We're done, right?  Please say we're done.

The aftermath:

 (fancy lighting, right?)

    Ended with a great-job-Maya kiss from Daddy :)